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Seeking help for 20 years
rose martin
Wednesday, July 22, 2009 at 05:34 PM -
Seeking Help
Judy
Wednesday, July 22, 2009 at 11:15 PMI am amazed at all you've had to go through, it must be s-o-o-o frustrating! I was wondering how your D.I.D. is during all these medical horrors. I don't claim to know a lot about it, but I've had a diagnosis of Dissociative Disorder and there's a lot of stuff I don't remember from my childhood. Anyway, I know it's frustrating trying to sort out what is a physical problem, what is psychologically based and what is maybe a combination of both. I'm glad you found this site and I hope it helps you to release some of that frustration.
The people on this site are very compassionate, so hope you will feel free to continue writing so we can be of whatever help we can. I will put a healing light around you and pray that it will protect you from further pain. Please keep in touch.
re: Seeking Help
jpw2008
Thursday, July 23, 2009 at 02:02 PMhi
I'm also amazed at how many people have dealt well with this.I see very little of life as I live in a small town in new york,I'd say rough 20,000 people in the whole area.I might see 100 people,maybe, a day.
If I'm in the house well i don't need to tell you how many, my mom+4 walls.
Deal with trauma,pain in my head won't end.
Jon Pat
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In reply to your kind comments~
Somewhere over the rainbow
Thursday, July 23, 2009 at 03:33 PMHi, Thank you each for writing, it helps me not to feel quite so alone. Even tho my husband left for the day again- (sigh) To answer some of your q's- DID- used to be called multiple personalities until they realized that there is a spetrum of the Dissociation a person can have. I do have lots of parts and in times like these, "my system" that should be running like a miniature corporation or family inside has to go into shut-down and survive mode. That's when things get sketchy and unstable for me- when "I" finally ripped the IV out of my arm last week and told the NEuro if she didn't stop trying to convince me my seizures were psychogenic that I wanted more and more to take a knife to my throat- Well, that was one of my protectors coming out- bursting out rather- Not good. (sorry- for some reason I can't get any breaks in my writing when I post here- old computer ??? ) I am on a no-harm contract and am very close to my therapist. He is professional about it, but has always been there for me./us. If I can't get rides to see him I talk to him over the phone, unfortunately, lots of times he can't hear me well - maybe because I live in the valley, mountains, I'm not sure. I can also email him tho- He's available if I am going over the edge, which- going off so many drugs (6 at once) I am extremely vulnerable- just praying that the Lord will work things out for me and heal my heart, because I feel so alone and abandoned by God- for having to go through that whole VEEG again- and be humiliated and pigeon-holed, and not having any one to guide me in going off these meds. It's just not right. But the world will never be right- God is the only one to reaLLY trust. He is my hiding place, my strong fortress, my abba Papa, my Savior. My rainbow maker~ and he is using this for good- ( its just hurts like @%#$#!) ~somewhere over the rainbow~re: In reply to your kind comments~
Anonymous
Sunday, July 26, 2009 at 11:02 PMI can totally understand with what you are going through. I was misdiagnosed with Bipolar Disorder and treated for that and put through so much humiliation from so many people. I really had Chiari Malformation, EDS, Teathered Cord and Cranio Cervical Instability. Thank God for my husband never giving up on me, praying for me I went to the Chiari Institute in New York and finally got the right diagnosis. I have had all of the surgeries I could possibly have for all of my disabilities and still do not feel any better so I will have to learn to accept pain as part of my new life. At least I still have God and my wonderful husband. Thanks for your poetry. It helps me get through my days.
re: re: In reply to your kind comments~
somewhere over the rainbow
Monday, July 27, 2009 at 12:29 AMThanks for responding
I am sad to hear that the surgeries didn't help. Maybe if you're open we could correspond- cuz I don't know if and when the option of surgery becomes available if I should go through with it for that very reason. I'm wishing there were a site where people could share their stories and we could have some long-term results gathered. We seem to have a lot in common~I hope you sleep well tonight and have a rainbow in your day tomorrow, even if it's a small one*
re: re: re: In reply to your kind comments~
Anonymous
Monday, July 27, 2009 at 12:11 PMI can honestly say I have met several people where they have gotten the same surgeries as I have and are doing amazingly well and have their old lives back. And I must honestly admit that while I am not where I need to be at least I am not where I used to be and they were very honest with me at the hospital that you do not always go back to how you were before. I guess I just need to have realalistic expectations.
I would keep the hope alive.........because it has worked for so many people.
re: In reply to your kind comments~
Anonymous
Sunday, July 26, 2009 at 11:03 PMI can totally understand with what you are going through. I was misdiagnosed with Bipolar Disorder and treated for that and put through so much humiliation from so many people. I really had Chiari Malformation, EDS, Teathered Cord and Cranio Cervical Instability. Thank God for my husband never giving up on me, praying for me I went to the Chiari Institute in New York and finally got the right diagnosis. I have had all of the surgeries I could possibly have for all of my disabilities and still do not feel any better so I will have to learn to accept pain as part of my new life. At least I still have God and my wonderful husband. Thanks for your poetry. It helps me get through my days.
re: re: In reply to your kind comments~
Somewhere over the rainbow
Saturday, August 01, 2009 at 02:49 PMThanks for sharing more of your story. It helps.
Yes, we do have to have realistic expectations about any surgical procedures. I think that was the hardest thing with me with my heart surgery- they told me I would be super woman again after 3 months post surgery. 2 months surgery I began seriously losing my mobility- serIousLy. I couldn't do anything- seizures every day for a very, very long time, besides 3 hours a day of not being able to talk or move, losing walking ability, dexterity, you name it- It would please me a great deal if the medical community at large wasn't so uneducated in our regards- I'm always forced to be my own doctor and regret, regret, REgreT! when I do not. But I'm really tired of doing their job and getting put through the mill for their rank treatment.
It's definitely a learning process- learning to trust yourself- instead of ? how many doctors? - (I wish I had kept count, I'd probably win some award~
) The rewards in heaven will be better anyway! over the rainbow-
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So glad you took your health into your own hands. God youve been thru the mill between doctors and Operations and false diagnosis and confusion and the docs not agreeing and in there , theres you, trying to live your life, I never heard of your emotional condition before so excuse my ignorance. How do you manage to get food and stuff? I live alone, I have neighbours but they arent neighbours, cats are friendlier so I do know what its like to be alone. Have you a Dog for Company? I found some aspects of the post hard to understand. Im glad you were assertive and went to NY to get the proper treatment, I think youre v strong. How is your emotional state now? Do you take meds for it? Are u still going to Therapy? Id like to help, I understand too what its like asking people for lifts, but Id suit myself and at the end of the day you gotta look after your health. Please dont isolate ! youve been thru hell and youre still here.. on the Site !!